Choice

The question arises whether usable artificial limbs increase choice as an optional tool or establish a norm that restricts choice. Parents of Thalidomiders were not given much choice. Immense pressure was used to have the parents equip their kids with artificial limbs. Society already judges certain tools. A hierarchy regarding movement exists. Crawling is on the bottom of the acceptance list, below the wheelchair, which is seen as inferior to the artificial leg particularly one that appears "natural." This hierarchy is not based on functionality for the person but rather on emotions, prejudice, and rigid adherence to a normative body movement. Tools like the wheelchair are frequently demonized in expressions such as "confined to the wheelchair." It is interesting that people do not say "confined to" artificial legs even though a wheelchair often leads to safer, easier, and more efficient mobility for an individual than artificial legs do. No one would use the phrase "confined to natural legs" for "normal" people, although in reality they are confined to their legs while many wheelchair users can leave their wheelchairs. Similarly, the negative concept of confinement is not used to describe driving a car, which is viewed as empowering rather than limiting, even though many of us are heavily dependent on this mode of transportation. In much the same way, most of us who live in the north would not survive a single winter without central heating but we generally do not label all of these people as "technology dependent."

Cochlear implants provide another related example. Do we allow parents to say "No" to them if they feel there is nothing wrong with their kid using sign language, lip reading, or other alternative modes of hearing? Will the refusal by the parents be viewed as child abuse (see Harris, 2000 for an ethical argument to view it as child abuse)? Might parents have been considered to commit child abuse if they had refused artificial limbs for their thalidomide kids? Or in today's world, could a mother be considered to commit child abuse if she refused to terminate her pregnancy after ultrasound showed phocomelia (i.e., hands and feet attached close to the body without arms or legs) in the fetus. Of course, ultrasound wasn't an option when most of the thalidomide cases occurred but it is today. Furthermore, would the mother abuse society by not fixing (cure, adaptation, prevention) the "problem"?

A hint to the answer to these questions is given by the following results of a survey of genetic counselors in different countries (Wertz 1998):

The majority in 24 countries believed it is unfair to the child to be born with a disability. 40% agreed in USA, Canada and Chile. 36% in Finland and UK; 33% in Switzerland and the Netherlands; 29% in Argentina, 27% in Australia 25% in Sweden and 18% in Japan.

It is socially irresponsible knowingly to bring an infant with a serious [no legal document defines what is serious] genetic disorder into the world in an era of prenatal diagnosis." More than 50% agreed in South Africa, Belgium, Greece, Portugal, Czech Republic, Hungary, Poland, Russia, Israel, Turkey, China, India, Thailand, Brazil, Columbia, Cuba, Mexico, Peru and Venezuela. 26% of US geneticists, 55% of US primary care physicians and 44% of US patients agreed.

A high percentage of genetic counselors feels that societies will never provide enough support for people with disabilities. The percentage of agreement for the statement ranges from 18% as a lowest to 80% in the UK. Germany is in the middle with 57%. The USA has a number of 65%.

These statements suggest that women don't have a free choice but to are led to follow the path of medical intervention. In the absence of a possible social cure for disability, the only option left that may appear to be available is the medical cure in whatever shape and form, independent of its usefulness and need.

The treatment of Thalidomiders, the pressure to install cochlear implants, and prebirth counseling raise a more general question about whether advances in a wide range of assistive devices, partly due to advances in micro- and nanotechnologies, will lead to increased or restricted choices. We can hope that technological convergence offers humanity so many choices that false stereotypes about the disabled are discredited once and for all. But this can happen only if we recognize the alternatives as real choices that must be considered with sensitivity, imagination, and — most importantly — the judgment of disabled people themselves.

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